When Kristin Carman, director of health policy and research for the American Institutes for Research, asked more than 500 health care providers and consumers who gathered Tuesday in Hartford if they believed that giving patients access to their doctors’ notes would help to foster patient engagement, hundreds of hands went up.
But when she changed the question – “What about inviting patients to participate in (hospital) quality-assurance committees?” – only a few people readily signed on.
“So you’re not as comfortable” with that, she said, nodding. “That’s because you’re getting to the edges of the status quo.”
She added: “Transparency is going to be crucial, on multiple levels” of the health care system. “We’ve kept the system fairly secret (from patients) . . . But everyone’s behavior needs to change.”
Carman was one of the speakers at a first-of-its-kind conference of Connecticut providers and patients focusing on fostering patient involvement in medical care. “Better Health: Everyone’s Responsibility,” a half-day event at the Connecticut Convention Center, featured presentations on topics ranging from end-of-life care to provisions of the Affordable Care Act, with a goal of breaking down barriers between providers and the people they serve.
“If you’re uninformed about health care, you pay a lot more and get a lot less,” said Tim Elwell, CEO of Qualidigm, the state’s Medicare consulting company, which helped to organize the event, hosted by CT Partners for Health. He said he hoped the gathering would be “Day 1 of a statewide initiative to make all Connecticut residents active participants in their health care.”
Speakers at the conference spoke of the tangible and intangible benefits of shared decision-making between patients and providers, including cost savings, better health outcomes, and the elimination of inappropriate and unnecessary end-of-life care.
The keynote speaker, Dave deBronkart, an international patient-engagement advocate known as “e-Patient Dave,” encouraged patients to take active roles in their care – from asking physicians who are taking notes during an office visit to “turn the (computer) screen around and show you” what they are writing, to sending doctors “pre-appointment agendas” with topics that patients want to cover.
DeBronkart took an active role in his own cancer treatment, reaching out to an online patient community that he credits with helping to save his life by directing him to treatment.
“How can it be that (some of) the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?” he asked, encouraging patients to do online research. “I’m not a do-it-yourself-doctor guy; I’m a participatory guy.”
He said he supports efforts to open-up patient access to physicians’ notes, test results and other records, citing a study done at Beth Israel Deaconess Hospital in Boston that found positive results from allowing patients to access their doctors’ notes.
A recent study in Health Affairs showed that patients who actively participate in decision-making with their health-care providers have better health outcomes and lower costs.
Stephen P. Kiernan, author of the book “Last Rights,” encouraged providers and consumers to become more engaged in end-of-life care options, such as hospice and palliative care and advance directives. He noted that Connecticut ranks lowest in the country in the mean length of stays in hospice care. That low length-of-stay rate suggests that providers are not referring dying patients to hospice care “early enough,” he said, and also indicates that “people may be suffering needlessly.”
Because people are living longer, Kiernan said, elderly patients should expect “a whole new kind of experience” at the end of life that allows them a larger role in decision-making. Studies have shown that dying patients in hospitals experience significant “untreated pain” and “futile care,” he said, while also paying much higher medical costs than hospice patients.
Meanwhile, he noted, only 18 percent of graduates of U.S. medical schools receive formal training in end-of-life care.
Dr. Kenneth Sacks, medical director of the Connecticut State Medical Society-IPA, and Nora Duncan, Connecticut state director of the AARP, laid out myriad changes under the Affordable Care Act, urging providers and patients to know their rights and responsibilities. Sacks said the changes will require providers to come up with new ways to assure that patients have “alternative access to care,” such as after-hours care and “non- face-to-face options” such as phone availability and e-mail.
Kevin Counihan, chief executive officer of Access Health CT, the state’s health insurance exchange, said the country is poised to experience “the biggest expansion in health care access in 50 years” – a process that he said would not be without some glitches. While the Connecticut exchange begins enrolling patients on Oct. 1, he said he expected that the bulk of enrollments would occur in late November through December. Although Connecticut is ahead of the curve in preparing for the massive enrollments, he predicted: “It’s going to be a little clunky.”
Dr. Patrick Carroll, chief medical officer of Integrated Care Partners, Hartford HealthCare, said both providers and patients are grappling with a fragmented delivery system, rising costs and significant variations in health outcomes. Patient-centered “medical homes,” growing in popularity in Connecticut, are one path through that thicket.
“We have to reduce costs. We have to improve the population’s health, and we have to improve the patient experience,” he said. “That’s our roadmap.”
Thomas Broffman, a social work professor at Eastern Connecticut State University, urged providers to listen closely to their patients and try to understand what motivates them. Often, he said, doctors can help patients make healthy lifestyle changes by showing them discrepancies between their values and their behaviors.
“Communication is a dance, not a tug-of-war,” he said. “In a tug-of-war, someone always loses.”
In a video address to the gathering, state Department of Public Health Commissioner Jewel Mullen said she supports patient engagement in decision-making and wants to “continue pushing a conversation in our state” to ensure that patients’ end-of-life wishes are honored, and that there is equity and transparency in Connecticut’s system of care.
C-HIT writer Kate Farrish and editor Lynne DeLucia contributed to this report.